Thank you all for your responses. You are incredibly sanguine about the trials you have been through. I guess I don't have a great attitude, and maybe that's why the 4 different urologists have all been nasty and short with me---a mere woman who has quesitons---then again, maybe not. Pain, infection, lack of sleep (I have to sleep 8 to 10 hours a night-just to function), serious operations---simply do not seem like living--- especially, after seeing my father go through this---and dying a year later. Just the results of the first TURBT in Apil kept me in the hospital almost week due to the intolerable spasms in my kidney/ureter. Then I was out of work for 4 weeks from exhaustion due to lack of sleep. Not living. Travel, which is my job-- is out of the question.
The most depressing thing of all is that they have made almost no progress in long term survival,new medication, and retention of the bladder in the 20 years since my father died---they just changed the name of the drugs, and the order they're given, and came up with another type of bladder.
It's a disgrace when you realize 1/2 million people have this disease--no fashion shows, walks, runs, parades, makeovers....nada. No specials by
Dr. Oz or a feature segment on The Doctors, because it just isn't fashionable or sexy to be peeing all over yourself. Nightmare doesn't begin to describe it.....again. Happy both my parents are gone, they could never live through this again.